Monday, May 26, 2008

Last week I received results from the final study of my last bone marrow biopsy. The results are detailed in a Chimerism Report. The Chimerism study was, I presume, named by researchers and not practicing doctors. Doctors that deal with patients really dont like to answer the question "Why is the report called Chimerism?" First of all, there is some rule in medicine that diseases, conditions, and body parts be given greek names. As it happens, the Chimerism study is named after a "monstrous creature" in Greek Mythology named "Chimera". Here is a picture of the 2 headed cutie. Chimera is the lesser known sibling of the well heeled three headed dog that guards Hell, Cerberus. Apparently Cerberus was the more successful of the siblings since he had an actual job. Chimera is described in the Iliad as, "a thing of immortal make, not human, lion-fronted and snake behind, a goat in the middle, and snorting out the breath of the terrible flame of bright fire". Chimera was unemployed and she was literally associated with bad news. A sighting of Chimera was an omen of storms, shipwrecks, and natural disasters.Back to the Chimerism report. The Chimer would be me. The purpose of the study is to quantify what percentage of my living stem cells can be traced to the new donor and what percentage can be traced to my 'original' stem cells. Since my original stem cells were well on their way to taking an early unauthorized retirement we made a valiant effort to evict all of them. We then introduced a batch of new donor supplied stem cells that hopefully do not want to retire early. Therefore, the Chimerism study seeks to discover whether the old stem cells are trying to sneak back into the bone marrow. We hope this does not happen. And, so far, so good!

On a final note, if I have to be a Chimer I'd like to think that the Lion part of me is from the donor and the Goat part is from my old self. The snake? Well, I know I still have that and it's still very much alive. Ha ha.

Thursday, May 15, 2008

Hallelujah! The ones that started all the trouble for me, my Red Blood Cells, are back to normal levels!

A recap. Normal Hemoglobin is 14 to 18 g/Dl. Jan 26, 2006 I was feeling very weak, went to see my doctor, and learned I had a reading of 6.1 g/Dl. Hemoglobin carries oxygen throughout the body, so I was constantly out of breath. Stem cells in my bone marrow were honked up, and were quickly forgetting how to make red blood cells. Turns out my white blood cells and platelets were low too. I was given a 50% chance of surviving 4 years. The only possible cure was this thing called a stem cell transplant, which itself offers only 50:50 odds of surviving just to the first year. Well, 28 months, a wonderful stem cell donor, and a stem cell transplant later, my Hemoglobin level was measured today at 14.2 g/Dl.

Cathie attended today's appointment with Dr. Andrey. Needless to say we were both elated at the blood test results. Doctor Andrey was in a jovial mood again, cheerful, optimistic. Up until last April I thought he was a serious, no nonsense doctor, all business kind of guy. Now I have to wonder whether his demeanor during that time was closely tied to my prognosis. When I reached the day +100 milestone in april, Dr. Andrey turned a corner along with my prognosis. In words in went from 'Not Good' to 'Favorable'. My 50:50 odds of surviving the first year are probably closer to 85:10 and after that I get about a 90% chance of living to a normal life expectancy. My Achilles heal will be my higher-than-normal risk of contracting opportunistic infections.

Well, this blog has been difficult at times cuz I normally do not like talking about myself. Writing about myself is only marginally easier. While writing I can convince myself that no one reads it anyway. However, my health is the topic of this blog so I figure I'm just staying on topic. I know I've strayed off-topic a little bit at times. That was done for the sake of my 'mental' health. It could have been worse, far worse. I could have opined about any number of controversial subjects. Going that far off topic would not have been cool.

As you can imagine, this has been an extremely emotional time for my family. I know I'm not the first to get a disease like this and I wont be the last. I've learned something about how to hold myself during this time from some of you who have given us so much support over the last months. I personally know 4 families just on our street who have had life threatening cancers. One woman, at least 10 years younger than me, had breast cancer a few years ago, and now has Leukemia. When you get the Leukemia diagnosis you dont have two years to figure out what to do, you have weeks. I had 2 years to live with my Myelodysplasia, plenty of time to plan, financially and emotionally. I was lucky. Sometimes life throws you a curve ball but then the next pitch is a fastball right up the middle that you can handle. Mmmm. It is baseball season so I was allowed that. I just want to acknowledge that, while I was unlucky to get a bone marrow disease, I have to be thankful that it was the indolent type. That is, it was pain free and slow acting. I had time to react, to adjust. Blessings in life are all over and can be found. I dont think it's naive to recognize them. And I dont think it's wise to belittle them.

Thank you to everyone who has registered with the NMDP and/or surfs the web using goodsearch.com with the National Marrow Donor Program as their selected charity. And thanx again for all your wonderful support for my family over the last few months! You are making me a better man.

Tuesday, May 13, 2008

All good here. Next doctors appt is Thursday at the clinic. I cant wait to see what levels my blood counts have reached since my last blood test 16 days ago. The hole in my chest where the Groshong was removed is healing nicely. I just keep a bandaid on it now. My finger nails are thickening up nicely again. There is a noticeable dip in nail thickness in the middle of each nail. The stem cells that create the nail-growing cells in my fingers took a moderate hit during chemo in January resulting in a short period of thinner than normal nail growth. Fascinating, this stem cell stuff.

Ok. The real reason for this post...There is a way to fund more NMDP registrations where all you do is do your normal internet surfing! Instead of using google as your search engine you use a website that uses the Yahoo! search engine. Yahoo! is probably just as good as Google for finding what you want. Whenever you perform a search, the charity of your choice gets a penny! Isnt that awesome! You can check the amount raised for the charity whenever you like. You dont have to click on any Ads in the search result page. Just by performing a search, your charity gets a penny! Not a lot of people use this search engine yet so the numbers are small, only $132 raised for the NMDP since Jan 1. However, that amount pays for almost 3 donor HLA typing tests at the NMDP. If more people used the search engine that number would skyrocket!

The search engine is GoodSearch.com. Go there, input 'national marrow' into the charity identification field and press enter. This will position your charity to the NMDP. Now, whenever you perform a search from that page, the NMDP will get a penny. There is no invasion of privacy, no registration, no user ID, etc... All you need to do is make goodsearch.com your default search engine. Also check out their newest feature, GoodShop.com. Using GoodShop.com you can shop online at many retailers and a portion of anything you purchase goes to the NMDP.

These 2 websites offer a way you can get money to your favorite charity by simply surfing the internet!

Sunday, May 11, 2008

Happy Mothers Day everyone! My mom is too exhausted to come over for dinner today, but we will celebrate here anyway with our own homegrown mom, Cathie.

I just wanted to put in one more post regarding becoming a stem cell donor. The procedure really is a slam dunk with no charge until May 19. You register, they send you a tissue typing kit where you swab the inside of your cheek with a Qtip, and you send it in. The cost of doing the DNA analysis, normally $52 to you, is paid for by monetary donations by others during this time (unless you want to donate $ too).

I was lucky to find a DNA match with marrow.org when I needed a stem cell transplant. In the summer of 2006 I was not so lucky, they only had a partial match. In the summer of 2007 some guy, somewhere, decided to be a stem cell donor volunteer. I owe my life to this person. I frequently wonder what it would feel like to donate some of my extra unneeded cells to save someone's life. I can not be such a donor anymore so I'll never know for sure, but my bet is that I would feel terrific for the person and their family.

For those of you who have followed my story here I hope you have been inspired as much as you have inspired me with your comments and support. I ask you to be inspired in one more way; to become a stem cell donor, to maybe save someone's life one day. Following is my understanding of what happens if you register as a stem cell donor.

Marrow.org (NMDP), registers your HLA typing in their database. The test they do identifies only 6 of the 10 major antigens in your DNA that affects graft immune response, ie: the success or failure of a transplant. People with a handful of diseases, including Leukemia, MyeloDysplastic Syndrome, Lymphoma, Aplastic Anemia, etc... have a doctor do a search of the marrow.org database. The search usually turns up a few to a few dozen donors with the 6/10 matching. Some donors have had the more extensive HLA typing so their complete antigen profile is registered in the NMDP database. It is recognized that there must be at least a 8/10 match to proceed with a stem cell transplant, 10/10 is the best. If a 8/10+ donor is not present in the search results, the 6/10 donors are called in 3 or 4 at a time to get the full HLA typing test. This is done with a very small blood draw at your local hospital. The stem cell recipient's insurance pays for this $500-$700 test, not the donor. If your HLA typing is found to be an appropriate match and the recipient wants to proceed, this is how they get your unneeded stem cells. The doctors will schedule with the NMDP. You will be schedule immediately for a physical where they will get a blood draw to look for additional things that may complicate a stem cell transplant and to make sure you are still in good health. If you pass the health screening all is a 'go'. Approximately 6 days before the recipient is to get your stem cell donation the recipient will start to undergo 'conditioning'. This means they will get total body radiation and/or chemotherapy to knock out their own stem cells. On the same day, you will start going into your doctors office every day for a short visit where the doctor will inject a synthetic human hormone that will cause your bone marrow to start creating lots of stem cells. Normally your bone marrow stem cells get a communication to create 1 of 4 types of cell, based upon current needs; 1. stem cell, 2. Red Blood Cell, 3. White Blood Cell, or 4. Platelet cell. The synthetic hormone that is injected tells your stem cells to divide and create lots of other stem cells. Your bone marrow creates more stem cells than can occupy the bone marrow. The extra stem cells are evicted into the blood stream. After 4 or 5 quick shots over 5 days, your blood is teeming with stem cells! You dont feel any different! On day minus 1 for the recipient, you will visit your hospital and sit in a comfortable recliner. The nurses place an IV in your wrist or arm. They draw blood out of your arm for 3-4 hours while you read a book,magazine or watch TV. There is no pain. The blood is routed through a machine that filters out the stem cells and is returned back into your donors body. There are no side effects, you only lose extra, unneeded stem cells. Some of you may remember the hearing about the old days of 'bone marrow' transplants. Those procedures were much more invasive and entailed the use of big needles on sedated donors. Stem cell transplants today are as described and only slightly more invasive than just giving blood. All costs are borne by the recipients insurance. Your harvested stem cells are transported overnight to the hospital where your stem-cell-free recipient is now feeling like a sack of moldy tomatoes. The next day as the nurses transfuse your cells into the recipient he/she and his/her family cry with joy and relief. This is called Day Zero for the recipient.

Can donors register for the NMDP database and change their mind if selected? Yes. They prefer you don't back out, but there is no contract to prevent you from doing so.

The decision to register as a NMDP stem cell donor is very personal. Please compare the amount of discomfort you may experience (based upon my hopefully accurate description), with the comfort and joy you may experience in saving a life. Please consider becoming a donor. And please communicate to everyone you know about this unique opportunity to register with the NMDP at no cost. Feel free to send them a link to this post to explain the process.Link: http://interanimate.blogspot.com/2008/05/day-123-last-word-on-donating.html

Thursday, May 8, 2008

120 days. Seems like a nice even number. 120 divided by 30 = 4. Four months tomorrow since getting new stem cells transfused into me from my Groshong central line catheter. Man, that catheter saw a lot of action. Unfortunately, it's usefulness has now become very limited. After a search of eBay I could not find a device that could connect a bottle of beer to the catheter cap, enabling a beer transfusion. Hee haw! Truth is, since I received permission to drink 24 oz per week from my doctor a few weeks ago, I've only consumed 1 beer. The one beer kinda wiped me out, had to take a nap. My abstinence will probably continue. Maybe this is a good time to officially quit my 6 bottle-a-week habit? It wasnt much, and I'm sure a study will come out some day proving how a beer a day is great for the heart. But, I've got other things to worry about now.

Yesterday my Groshong catheter was removed. The removal procedure is much less complicated than the installation. Contrast an hour in the operating room on the table with several specialist doctors cutting into large veins while you are zonked out by a demerol-valium drip; to a small closet-sized room where a single physician-assistant with a simple catheter removal kit and a few ccs of lidocaine yanks out the line. I asked the PA how she could pull a 1/8 diameter line around a 160 degree turn out of a jugular vein; without getting a free crimson spray paint job. She really ddidnt have to explain though. It's obvious they've done this a million times and the procedure works, otherwise they'd have a bigger room and more people involved. So I got the lidocaine pricks, numbing the area on my chest around the catheters exit point. The PA said I'd feel some pressure or pulling. The pulling lasted only 15 seconds. I kept my eyes closed. Just after the pulling started the thought went briefly through my mind, "ok. stop! you know, lets just leave the thing in there, I'll just deal with it!". A crazy impulse for sure. But then I heard her say "It's out!". I looked over at her. Dangling from her rubber-gloved hand, glistening in the florescent light, still warm and silent; it hung. My entire Groshong, not just the above ground part. A scene from the movie 'Alien' crossed my mind. Without further adieu the PA threw the face sucker in the toxic waste receptacle that hung on the wall. Why did I ask her if I could keep the thing? I did that. Kinda crazy. I could have made a mobile out of it. In a couple days I'll be able to take a dip in the pool again.

Please help by being a stem cell donor. From now thru May 20 you can become a registered stem cell donor by registering at marrow.org. This is kind of a unique opportunity. I've been saving my 'become a donor' spiel for the right time. It is now the right time because it is free! You see, normally it would cost you $52 to register to become a donor since that covers the cost of your HLA typing. Until May 20 it is free because the NMDP is doing a Mothers-day drive. Donating your blood may help save a life. But donating your stem cells is almost sure to save a life if your cells are used. The stem cell harvesting procedure is very non-invasive. Read about it at marrow.org. Following is some info I've cut and pasted from marrow.org. Thank You!

Did you know:- Every day, more than 6,000 people search the National Marrow Donor Program® (NMDP) Registry for a life-saving donor.- Only 3 in 10 patients get the transplant that could save their lives.- Seventy percent of patients will not find a match in their family.

You can change that!

From May 5 to May 19, the Thanks Mom awareness and recruitment campaign of the NMDP has an ambitious goal: to add 46,000 new members to the Registry of marrow donors and raise $100,000.I encourage you to join me in making the Thanks Mom campaign a success. What better way to say "Thanks, Mom" for giving you the gift of life than to share that gift with another.

Saturday, May 3, 2008

At Tuesday's appointment, my doctor said I could cut my immune suppressant drug Tacrolimus in half, to 2 Mg per day. I'm now down to 25% of what I was taking at day +28. The dr. is now scheduling appointments at 2 week intervals. So I went from biweekly to semiweekly appointments in the span of a couple weeks.

Oxygen UpMy blood counts have shown rapid progress since eliminating Septra and Maribavir in April. My Hemoglobin has reached 98% of normal. This has me thinking about testing out my stamina by trying to actually jog a bit on my next walk. In the last 3 years I could not run more than 50 yards without getting completely out of breath.

Groshong EulogyThis coming Wednesday I have an appointment to get my central line catheter removed. The device has been hanging out of my chest since December 28 and has served me very well. It allowed direct and immediate access to my vascular system during and just after my transplant. Lately, however, it has gone unused. It has always been a source of annoyance and occasional itching. All in all it was a good friend, but I am not sorry to see it go. For the curious of you, below I have provided more information about the Groshong port and a picture of my install. It is a truly amazing recent invention that contributes to the increased odds of transplant success.

Thank you all for your continuing kind and supportive thoughts, prayers and wishes. It is totally impossible for me to imagine getting to this place in my life, and our lives here, without all of your help. Cathie continues to be a champ supporting our family while I am recovering. In a couple short months, I hope to be a productive member of society again! My doctors support that notion.

The Groshong Central Venous Catheter------------------------------------A brochure on the Groshong:http://www.bardaccess.com/pdfs/brochures/bro-grosh-cath.pdfThe end of the Groshong is a rounded dead-end. Just above the dead end in each of the 2 channels of the dual Groshong is a short slit. The slit is forced open outward when fluid is infused into the line, disgorging the fluid into the vein. The slit is forced open inward when a vacuum is applied to the line. This is how they draw blood samples. When there is no pressure in or out, the slit remains closed. Before I knew all this I pictured the catheter as an open tube that is just sitting above my heart. I imagined that if the catheter was accidentally cut open it would result in a blood geyser, a big mess. It turns out that this is not the case. Knowledge is a big help in combating an over-active imagination.

My Groshong port installation:Note: This picture of my chest is provided for the educational value of displaying an installed Groshong Port. Please click the link only if you are not offended by bare male chests. Also, I'd appreciate not finding the picture featured at hottestmalestrippers.com. I am, however, available for your private bachelorette and birthday parties. ;-)Anyway... I have edited the picture to show the part of the catheter that is hidden under the skin. After it disappears into my chest it is tunneled up to and enters my jugular vein. From there it does a 150 degree turn downwards to a place where the jugular meets the Superior Vena Cava, just above the heart. When they remove the Groshong next Wed there is no sedation, they just slide it out. Gulp. Imagination, be still.